Overview
- About Public Involvement
- About the Public Involvement Pool
- Who can join the PI Pool?
- What can I expect from joining the PI Pool?
- Signup Form
- Past Activities
- 2025
- 2024
- 2023
About Public Involvement
The aim of Public Involvement (PI) work is to ensure that research accurately reflects the preferences, needs, and priorities of members of the public. Their perspectives, including their experience and concerns, need to be included in different aspects of research processes and outputs/results.
PI work has been shown to improve the quality of research by enabling researchers to benefit from the lived experience of relevant groups of people. Also, it helps ensure that research is ethical, transparent, and gives members of the general public a voice, reflecting the principle of "nothing about us without us."
If you want to learn more about what Public Involvement is, please click here.
About the Public Involvement Pool
What is the PI Pool?
The Public Involvement Pool, or PI Pool for short, was set up by Alzheimer Europe in 2023 to create a European online community.
This pool of people is united in their interest in dementia research and brain health and their wish to contribute to research. The PI Pool's goal is to connect research teams to members of the general public and enable them to ask ad-hoc questions as well as reach out in advance to ask for more formal feedback to help shape the final study design and/or materials.
What is the PI Pool NOT?
- The PI Pool is not a newsletter.
It is a network of people from the general public managed by Alzheimer Europe who receive invitations and links via email to provide feedback. If you would like to receive regular news updates, please sign up for our AE Newsletter here.
- The PI Pool is not a support group.
If you are looking for support groups or information, please reach out to your national Alzheimer organisation. They will be able to provide you with adequate support and resources.
- Members of the PI Pool are not research participants.
Members of the PI Pool provide personal feedback and insight aimed at helping researchers to better understand the needs and views of lay people.
Who can join the PI Pool?
Alzheimer Europe values diversity and inclusion and is looking to expand the scope of the PI Pool to integrate a great variety of people. The Public Involvement Pool (PI Pool) is for people with or at risk of dementia, anyone with cognitive difficulties (e.g., with memory, language, or planning), informal carers, and members of the public who are interested in providing their experiences, perspectives, and concerns about dementia-related research or other dementia-related issues.
Health or social care professionals, researchers, and students are not eligible to join because the goal of the PI Pool is to ensure that the voices of lay people, specifically from the aforementioned groups, are heard by those groups.
Requirements
Members of the PI Pool must be residing in an EU country or in another European-region country such as the UK, Iceland, Norway, or Israel. Please note that all communication will be in English. Your English does not need to be perfect, but you must be able to understand and communicate in English. There is no specific age limitation. However, people who join the PI Pool need to be at least 18 years old.
In addition to people with no cognitive problems, we particularly welcome:
- People with cognitive problems such as Mild Cognitive Impairment or Subjective Cognitive Decline
- People with dementia
- People at higher risk of dementia
- Informal carers or supporters of people with dementia
- People with disabilities
We warmly encourage people from minority or marginalised groups* to join our PI Pool as their unique experiences are extremely valuable and underrepresented in many research projects. Rest assured that you do not need to disclose any information about yourself that you do not feel comfortable sharing.
*Including but not limited to people from minority ethnic groups, from the LGBTQIA+ community, people with low socio-economic status, or people living in residential care settings.
What can I expect from joining the PI Pool?
Members of the PI Pool will have the opportunity to provide input on different aspects of ongoing European research initiatives, e.g., on new technologies and artificial intelligence-based approaches to dementia prevention or management, palliative care, dementia risk prediction, and information materials.
Alzheimer Europe staff members regularly send out email invitations to members of the Public Involvement Pool network to invite them to participate in various online consultations or short surveys. Members might, for example, be asked to provide feedback and share their personal experiences:
- In online surveys
- In writing
- In online meetings or interviews (occasionally)
Among other things, PI Pool members will receive invitations to:
- Online talks and informational events hosted by Alzheimer Europe.
Signup Form
To register for the Alzheimer Europe PI Pool, please follow the link below and fill out the registration form: AE Signup Form
Please take note of the terms and conditions of Alzheimer Europe's General Privacy Policy.
Past Activities
2025
| Month | Topic | In Cooperation with |
|---|---|---|
| January | Members received a second opportunity to provide feedback on a questionnaire to remotely trace depression, anxiety, and pain through diary video recording among people with dementia receiving palliative care. | AI4HOPE |
2024
| Month | Topic | In Cooperation with |
|---|---|---|
| December | Members received a document about palliative care and were invited to provide feedback on a questionnaire to remotely trace depression, anxiety, and pain through diary video recording among people with dementia receiving palliative care. | AI4HOPE |
| September | An invitation for carers/supporters of a person with dementia to volunteer for an online research interview about their personal experiences of the dementia diagnosis process and their daily lives was shared with the PI Pool. | REBALANCE |
| September | Members provided feedback and shared insights and concerns on a series of negative photos used for an online eye test. | PREDICTOM |
| August | We provided an informative presentation about the results of the EU elections and their impact on the lives of people with dementia. | AE |
| July | Members were asked about their main concerns about dementia care in their countries, and the feedback was used in our policy campaign to reach out to newly elected MEPs. | AE |
| May | Members were invited to share their recommendations, suggestions, and feedback on the PI Pool to help shape and improve it. | AE |
| April | Members received an invitation to participate in an online survey on certain ethical issues related to artificial intelligence in the area of health ("brain twins"). | eBRAIN-Health |
2023
| Month | Topic | In Cooperation with |
|---|---|---|
| October | Call for people from the general public to join the Prominent Public Advisory Board. | Prominent |